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Saturday, December 31, 2011

The last few months of 2011 were hard. It's made me glad that 2011 is over, despite all the good times from earlier in the year. Those good memories all seem so far away. Thank goodness for this little blog that allows me to travel back over those good days.

I have been contemplating lots of things today... One of them being this blog. Am I done with it? Has it served it's purpose? Is it time to let it go? No decisions made yet.

Do you make resolutions? I was reading What I would tell you and have decided to embrace her idea that we already have enough on our 'plates' to worry about making resolutions. Everything she mentions in that post rings so true. I wish for all those things.

I've also been thinking about what I want out of this year.

I'm not calling them resolutions because that just seems like you're setting yourself up for failure but there are things I want. I want to be healthy. I want to be happy. I want to figure out what makes me happy. I want to be a good example to my girls. I want to spend good quality time with my family. I want to make date nights more of a priority. I want to worry less. I want life to be simple. I want, I want, I want...

Thursday, December 29, 2011

After all the Christmas crazies the past few days have really slowed down.

It's felt really good.

Christmas is always busy. We're off to Damian's parents on Christmas Eve, Christmas day we have family here and Boxing Day we're at my Dad's. It's three fun filled days of Christmas, family, presents and eating!!

Over the course of those three days the house takes a beating. It doesn't seem to matter how clean you get it before Christmas, it's a complete disaster by the 27th. An overwhelming disaster.

Of course, you have to take pleasure in some of the clean up since it means finding new homes for all the new treasures! You know you're spoiled when this becomes a daunting task!

The kitchen is still... hmm what's the word.... FULL. The counters are still covered in baking and sweets and the fridge is full of leftovers (most headed for the freezer because by then I'm done with turkey for a while!)

With a family of five, despite having laundry all caught up on the 24th, by the 27th we're behind about half a dozen loads!

It finally feels like we've gotten a grip on the situation. I can't take much any credit for it as I've been back at work the past two days.

The quiet days at work have been a nice switch from the quick pace of the holidays... and I never thought I'd say that!

Saturday, December 24, 2011

I've seen a variety of Christmas surveys floating around in the bloggy world lately. I thought it looked like fun and maybe you'd like it?

1. Eggnog or hot chocolate?

Hot chocolate for sure. Add a splash of Bailey's or some peppermint falvour on those special days.

2. Does Santa wrap presents or just sit them under the tree?

Santa leaves unwrapped presents in front of the tree.

3. Coloured lights or white lights?

Damian really likes the multi coloured lights and I've always liked the 'one colour' look. We compromised and for years we had blue lights on the house and multi coloured lights on the tree. Three years ago when we moved here we didn't have enough lights to line the front of the house properly and have since purchased multi coloured lights for outside and now have white lights for our tree inside. All that being said, with the chaos of our fall 2011 there are no lights on our tree or house this year!

4. Do you hang misteltoe?

Yes we do. In a high traffic area even... muah!

5. When do you decorate?

I like to try and decorate the last weekend in November. We managed to get the tree up early enough in December this year but with Caelan in the hospital I only put up most of our decorations this past Monday (December 19th at 4 o'clock in the morning!).

6. Do you open gifts on Christmas Eve?

I grew up opening only one gift on Christmas Eve - always a new pair of pajamas. That's a tradition that we continued with our kids. However, we also celebrate Christmas with Damian's family that day/evening and despite Gramma's protests over the years, we have started opening our gifts with them then too.

7. Snow. Love it or dread it?

LOVE it! It brightens everything up on those dark and dreary winter days. The perfect Christmas morning would have huge white snowflakes falling gently all day.

8. Real tree or fake tree?

Fake.

9. What's the most important thing about Christmas for you?

Being with family of course.

10. What's your favourite holiday desert?

Oh my... it's impossible to choose just one!! Fudge or shortbread.

11. What tops your tree?

Stuffed Tasmanian Devil... Kind of a long story. It goes back to our very first tree. At the time I couldn't find an angel or star that I really liked. I should also mention that my husband has always been a huge Looney Tunes fan. McDonald's was giving away stuffed Looney Tunes characters with their happy meals and we had Taz. I don't remember who decided it should top our tree but it's been there for 15 years now.

12. Do you prefer giving or receiving?

Nothing beats giving. Well unless someone wanted to give my a million dollars, then I think I'd make the exception!

13. What's your favourite Christmas song?

Again I'm not sure I can name a fave... Music is background for me and I'm notorious for not knowing who's singing or the name of the song, despite trying to sing along. I'd like to say Christmas songs were different but not much. I know that I like to sing "We wish you a Merry Christmas"

14. Candy canes, yuck or yumm?

Meh... Well yummy if stirring a steaming cup of hot chocolate. or paired with chocolate. Otherwise, no thank you.

15. What do you leave for Santa?

Homemade cookies or other Christmas baking and milk. Carrots for the reindeer.

16. Do you have a favourite tradition?

Definitely stockings on Christmas morning. We meet up in the master bedroom and everyone opens their stockings in our bed. We usually try and get a family photo then too before the chaos that is opening gifts begins!

17. Do you prefer to shop on-line or at the mall?

I'm learning to love on-line shopping! No lines, no crowds, what's not to like?

18. Christmas letter or Christmas card?

Usually a Christmas photo card.

19. Favourite Christmas movie?

The Grinch who stole Christmas - animated version. In recent years The Polar Express is near the top of my list. Although I still really enjoy all the old traditional television specials that we have on dvd - nothing beats Frosty and Rudolph. There are probably others I just can't think of right now...

20. Favourite holidaymemory as a child?

I have to say that I have a lot of amazing Christmas memories from my childhood and I'm obviously terrible at picking favourites... It's a toss up between spending Christmas Eve with the Marquardts, going to church and singing carols... or... Decorating the tree was always a special family time. I used to make such a fuss about it only being done after my birthday! Now, I fight to get it up before!

Friday, December 23, 2011

Those first few days after Caelan was admitted back into the PICU were horrible and I was a mess.

Returning to work I knew I would have to prepare myself. I knew that I would most likely have to talk about what happened. The first couple times I talked about it I had a hard time. I would get teary eyed, I'd have to pause and gather myself before getting too choked up. As the days went on I separated myself from the story and was able to regurgitate it without getting too emotional. I hardened. It's a survival mechanism. I thought I had a handle on things and was getting stronger... Well, unless the
person I was talking to started to cry, then there was no holding back.

Then something happened.

I was surprised by a loving face from the past, shopping in a store, and I was completely caught off guard. When asked about Caelan, I immediately found myself choking back tears and was overwhelmed by the caring concern and admiration expressed.

It's not a bad thing.

It just made me realize that I'm in control at work - where I'm ready for questions and my guard is up.

But catch me with my guard down, somewhere unexpected and my emotions will run amok.

Thursday, December 22, 2011

We received these treats from some awesome folks who shared the recipe along with the treats. I knew immediately that these would be the perfect nummy for the girls to make. Darcy's been helping lots with the Christmas baking this year. Last night she was rolling out peanut butter balls to her hearts content! Tonight we're planning to decorate some gingerbread and make minty mountains.

The girls school had their Christmas Concert on Tuesday night. They moved the concert over to the high school since it would hold more people and the place was still packed. Despite the huge crowd I was able to wish many familiar faces a very Merry Christmas. As always it was a great show and always fun to go to... despite the fact that I was completely exhausted and not entirely looking forward to it. (Total Mommy confession right there) So happy that I sucked it up and went.

Wednesday, December 21, 2011

We had a Christmas get together last weekend and I've been wanting to get some of my pictures up since then. We participated in an activity that used to be an annual tradition but that we haven't done in years... Especially in this fashion. We made individual gingerbread houses with graham crakers!
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The table was all ready when we got there.

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Can you say excited?

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Getting so grown up...

Caelan's first day out of the hospital.

My masterpiece

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Thing One

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Thing Two - looks a little guilty, eh? Think she snuck a treat?

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My sis - check out that shingled roof!

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Her hubby - that's a ladder leaning on the house on the right!

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Mom's, complete with a shed at the back that you can't see!

I would say that we all had a really good time!

Oh and there were also a couple of these consumed! (Tons of other yummy goodies too!) Look how pretty and festive they are and so absolutely delish! Wish I could tell you what was in them, but Mom will have to post that below!

This is what the holidays are all about... No, not drinking fancy beverages! Spending some good quality time with family. xo

Sunday, December 18, 2011

The good/bad news is that it changes every two days as we slowly wean him. The first to go will be the ativan, then the methadone and finally the clonidine. We're looking at a couple months at least though...

Saturday, December 17, 2011

Late Thursday afternoon we heard rumours of possibly 3 nights a week of nursing. It completely raised our spirits and our hopes, but faced us with another decision. With three nights of nursing, do we take it and get out of the stinkin' hospital or do we hold out for more? When were they able to start? How soon before other nights were covered? So many questions... We both really wanted to have our family under one roof for Christmas yet we knew that we'd have to really stay on top of the situation to get other nights covered.

Friday morning we got even better news. We had a nurse for three nights next week! December 20, 21 and 23. Nothing available for 24 or 25 which is pretty much to be expected. Then starting on December 26th we'd have full coverage for Monday to Friday and alternating weekends!

I admit to being completely shocked. They really didn't inspire much hope for nursing at all. In fact they really didn't even give the impression they were working on it. Everyone at the hospital who wasn't CCAC would have words of encouragement and offer whatever they could, but the actual team who organizes the nursing support seemed quite hands off. They basically wished us good luck and told us to try going through our private insurance. We were infuriated! After many phone calls (to Managers, Directors and nursing agencies) we found out that they were in fact still working on it and meetings were taking place to get services in order as soon as possible.

All that to be said that we wasted no time getting Caelan's prescriptions in order and hightailing it out of there!! We brought him home last night to some very excited and surprised girls!! We were more than willing to suffer through a few nights on our own to have our boy home with us. Especially knowing that we have nursing just around the corner!! It feels SO GOOD to have him HOME!!!

I have to admit to being a bit disappointed that we won't be using the same nursing agency that we had in the past. We met some amazing nurses and am sorry we won't be having them back. I can only hope that we meet some new fabulous nurses who mean as much to our son and family as some of them. xo

Friday, December 9, 2011

Well, tomorrow will mark two weeks since Caelan was re-admitted back into the Intensive Care Unit at CHEO. Today, Caelan was moved up to the floor (5E). It's a little bittersweet as we were really hoping to be discharged from the PICU and avoid going up to the floor at all costs. Too many nasty bugs in the hospital at this time of year...

Caelan's doing really well but still hanging on to that last little bit of oxygen. I misunderstood yesterday as I thought that prior to the trache change he was off the oxygen but apparently not. They added a very small amount of oxygen to his humidity and that's what's keeping his sats up. They tried again last night to take that last little bit away and his sats immediately dropped and hovered between 88-90, which is unacceptable. With that little bit added he stays in the mid 90s.

In addition to his lazy breathing, the other thing keeping us in hospital is the lack of nursing available in the community. Our main nurse, who previously worked 4-5 nights a week with Caelan, had to look for work elsewhere when Caelan's trache was removed. I'm happy to say she found a great position but at the same time I'm so sorry that she's no longer going to be coming here. It took a long time to get that comfort level and continuity of care with our night nursing and I dread starting all over. Especially since we found out today that the agency that we used to get our nurses through is unable to support the schedule we've requested. That means that we probably won't be seeing any familiar faces at all and truly starting from scratch with new nurses from different agencies. I'm really not looking forward to it.

Thursday, December 8, 2011

Wednesday, December 7, 2011

They continued to wean Caelan's vent overnight so that this morning once he was awake we could stop it all together. It went pretty well. He certainly worked a bit harder but seemed to be adjusting. I get the impression that there was some concern as most felt he should have been able to wean quicker from the vent. (What else is new? Everyone thinking Caelan should be able to do things quicker!?!?) I got the idea that they thought he should remember how to breathe with the trache but Caelan likes to prove everyone wrong and needed to go step by step. I just think the vent makes it so easy and makes Caelan a bit lazy. Breathing is hard work, ya know! Anyway, he seemed to be doing well and we're just hoping he doesn't get tuckered out.

ENT came in to do the trache change early this afternoon and that went about as good as can be expected. They changed the trache from a 4.5 Bivona cuffed PED to a 4.0 Shiley PED - don't worry that's more for me than you! Basically they went down a size, however, I have to say it looks a lot bigger than the neonatal trache he had in before!! Probably a lot more appropriate for his size though...

The hallucinations continued today. My poor boy. At least they don't seem to be frightening him, so I guess that's a good thing. They do distract him though. He'll be focused on someone who's talking to him when all of a sudden something catches his interest up there on the ceiling... sometimes he reaches up to 'touch' or 'grab' whatever it is he is seeing... It's kind of funny, but not funny all at the same time.

His face is still expressionless and that really bothers me. At least it's familiar this time and I know that as the drugs get out of his system more and more of our Caelan will shine through. He's starting to move his mouth a bit, pulling his lips in, and sometimes scrunches up his eyes but that's about it. oh and he can pout like nobodies business!

Now, we wait - again. So much waiting...

I just hope that Caelan agrees that all is good and he's just as anxious to get home as we are!

Tuesday, December 6, 2011

Sometimes the time goes so slowly in hospital and other times you can barely keep up.

Those are our days at CHEO.

Lately the days have been slow, and it's been a nice change of pace from last week.

Caelan has been slowly waking up. It's a very gradual process as there are still lots of drugs in his system. We're working hard at keeping him from withdrawing but today he seems quite focused on the area above his bed... I'm wondering if there are some pink dancing elephants or singing Thomas trains up there. We've been told that if Pain Services have the doses correct he shouldn't be hallucinating but you'll have a hard time convincing me of that today. It's hard to watch your child suffer from withdrawal. Caelan doesn't seem too bothered by the shakes, and actually they seem much better today. I think it probably bothers Mommy more.

Yesterday was a pretty momentous day. Taking some significant steps in the right direction.

Caelan had his eyes open for a good chunk of the day. I'd have a hard time saying he was alert but definitely aware and awake enough to give some people the stink eye when they entered his room!

He managed to get rid of that foley catheter since he's been peeing like a racehorse. Most of the puffiness is gone although his tummy is still quite distended.

And hooray, hooray, the central line is out with no foreseeable requirement for regular blood work!! That means we were also able to stop the heparin solution that was going in. The clot he had was gone but there's such a higher risk for a clot to form with a central line they kept the heparin running at a much slower rate to prevent another clot from forming.

ENT came by and changed Caelan's trache ties. They were pretty gross since they were the same ones from surgery day. We're working on lowering Caelan's vent settings to hopefully have him completely off of it by tomorrow morning. Also on the schedule for tomorrow morning is Caelan's first trache change post op. It's a bit hard to believe that tomorrow will mark one week since Caelan got his tracheotomy back.

Today we finally touched base with Discharge Planning and they're hoping to have nursing all in place by the weekend. Sounds a bit like a dream to me... I think I've mentioned before that because we're already familiar with all the tracheotomy care there shouldn't be much delay in getting discharged after that first trache change. We're looking at a couple days of observation and some kind of weaning schedule for all those fancy drugs but then we're pretty much good to go!!

I'm trying not to get too excited about possibly being home by the weekend, but let's face it, who am I kidding?? I'm over the moon!! That would make me so super duper happy!!

Monday, December 5, 2011

Just over a week ago, had you asked me what the worst possible outcome of all Caelan's respiratory issues could be, I would have answered a tracheotomy. I felt that it would have made the past three months all for nothing. I couldn't imagine anything worse. We had so many plans and dreams for the following year and they all involved Caelan being trache free.

Then last Sunday happened and I got 'worse' in technicolour. It put everything in perspective for me.

A tracheotomy is not the worst thing ever. We were doing it and doing it well for the past three years. It works for Caelan. We know this. We've done this. We can do this again.

Yes it's scary. However, I'm hopeful that with his cords pinned open it will buy us a little time when doing trache changes. Instead of seconds, we should have minutes. Hopefully it won't send Caelan into a complete panic because we know he's got a pretty decent airway without the tracheotomy. We'll just have to wait and see though.

Along those same lines I'm hopeful that Caelan will tolerate having the speaking valve on his trache. That would be so cool! Not only would he be able to create more sounds and continue to work on the whole speaking thing, but it will be good practice for him if and when ever he decides it's time to decannulate.

See, I really think this is just Caelan getting his way, again. He's the boss. He knows what he likes and what he doesn't. I just simply wish he'd found an easier way to let us know that he wasn't ready for this big step. The good thing is going forward we'll be able to test out whether Caelan is ready for decannulation or not without having to go through any big surgery. Now that his cords are pinned and we're confident that his upper airway is good we'll be able to 'cork' or 'plug' Caelan's trache periodically to test his readiness for removing the trache. We can start slow and build up to longer periods of time so we'll know for sure before the next surgery if it's going to work.

The surgeons suspect that Caelan has a soft trachea - tracheomalacia, particularly in his lower airway close to wear the trachea branches off to the lungs. For Caelan this means that his trachea collapses in on itself as he inhales, probably more so when he's upset. They hadn't seen any strong evidence for it before. The good news is that as Caelan grows his trachea will strengthen and harden, so he'll basically grow out of this.

The down side of the tracheotomy is having to rely on nursing again. I shouldn't complain though, we've met some amazing nurses who allow us to sleep at night. I can only hope that we'll get some of them back. I've been pushing for Discharge Planning and CCAC to be contacted because we need to start that ball rolling if we want to get home soon. There's no delay for us to stay in hospital and learn trache care, we've done all that. It's just a matter of waiting on nursing after that first trache change.

Other than that, I'm just really sorry my little dude won't be able to swim in the tub like he was loving!

Sunday, December 4, 2011

Saturday, December 3, 2011

I'm happy to report that there isn't too much new news on the Caelan front. We've started the process of weaning the medication and slowly waking him up. He began his methadone yesterday and after his second dose we turned off the morphine. I admit to being terified with this plan. I understood that the methadone should take the morphine's place as far as pain medication but to just turn it off like that made me nervous. The methadone should also help with any withdrawal so I'm keeping my fingers crossed. They reduced his medazolam (versed) by 10% today and tomorrow will try and replace it with ativan which is another sedative but not a narcotic. Caelan slept most of today with brief periods of being slightly awake. He'd try to raise his arms and lift his head but it takes every ounce of his strength before he flops them back down exhausted. This evening he actually signed 'up' in the slowest of slow motions. When asked if he could try and open his eyes the best he could do was raise his eyebrows as high as can be, barely managing to open his eyes a slit. We're just at the beginning of waking him, he's still not ready to be taken off the vent yet. Still too sedated for that, but the slow steps are good. This morning they changed the vent settings to c-pap (not the same mask as when he was decannulated but the same pressures and oxygen levels delivered to the tracheostomy). Both Damian and I noticed a decrease in his puffiness, there's still a lot of swelling but he doesn't look like he's about to pop. There was some give to the skin on his hands and feet and they were no longer as tight. Nephrology is keeping a close eye on all his blood work (done twice a day through that lovely central line - no pokes) and have ordered another urinalysis. Renal function looked better today, a slight improvement from the past couple days. Oh, and all that poop protocal paid off BIG time! It feels like everything is moving in the right direction.

Thursday, December 1, 2011

Now that Caelan's trached, his airway is almost a non-issue. He's still vented and tomorrow they will begin to wean all the heavy narcotics and slowly start to wake him up. Should be interesting... Everyone seems to be psyching themselves up for the wild boy's return!

Infectious Disease has discontinued any wide ranging non -specific antibiotics after none of the various cultures grew anything in the lab. No infections have been detected. They'll remain on the scene but at this time have basically signed off.

Cardiology reported a strong healthy heart after the ultrasound (echo) done on Caelan's heart the other day. No concerns there.

Feeds were started again yesterday. We started really slow at a rate of 10mls/hour, increasing by 5mls/hour every four hours that he tolerated it to a max of 40mls/hour. Mid day today Caelan's heart rate increased and he seemed flushed and uncomfortable. We wondered if it was his gut getting reacquainted with his food and held the feed for a couple hours as well as beginning the poop protocol medicines. I didn't ask Damian how that was going this evening, so I'll go with no news is good news!

Caelan is retaining fluid. He's puffy PUFFY! He's accumulated so much fluid and is so swollen that there are no wrinkles or creases in his usually pudgy little hands and they look really painful. You can also see evidence of this in his face, his feet and his belly is all distended too. Heck, his belly button has almost disappeared! This is called edema.

If the blood flow to the kidneys is decreased by an underlying condition such as heart failure, the kidneys react by retaining salt. This salt retention occurs because the kidneys perceive that the body needs more fluid to compensate for the decreased blood flow. If the patient has a kidney disease that impairs the function of the kidneys, the ability to excrete salt in the urine is limited. In both conditions, the amount of salt in the body increases, which causes the patient to retain water and develop edema. (Source:http://www.medicinenet.com/edema/page2.htm)

There are lasix they can give him to help him get rid of some of this fluid but it's always a fine line as to when it should be done. A bit of a balancing act. This afternoon they finally went ahead with it and it seemed to be working well when I left (in that he was peeing out a ton).

Caelan's kidney seems to be the biggest priority today. With a solitary kidney it's always a concern but often takes a back seat. Over the weekend when Caelan went almost 48 hours with no real hydration, I mentioned my concern that this would be extremely hard on his kidney, but at that time a safe airway was a much greater concern. Not surprisingly in addition to the edema, blood tests show that the functionality of his kidney is deteriorating. He's also had some soft blood pressure readings. Blood pressure can also be indicative of a kidney in trouble.

First we wanted to determine if that blood clot in the general area of the kidney was contributing to the problem. The heparin (blood thinner) was stopped hours before surgery on Wednesday and wasn't planned to be restarted for a week post op to allow for healing. An ultrasound was ordered for this afternoon. I am relieved to say that the results from this ultrasound were received this evening and there is no longer any sign of a blood clot. They'll be monitoring the kidney very closely over the next few days and see if we can't get some better numbers. Nephrology has been made aware of his situation as well.